Kids need intensive health care at home after they have been in
the hospital for many different reasons. Medical equipment and
devices can:
- function as a monitor
- provide foods and oxygen when kids can't eat or breathe
on their own
- perform some of the vital functions of the kidneys, heart,
and lungs
In each case, it's vital that parents, siblings, and other
family members learn about the medical devices and equipment that
the kids they love depend on.
During the transition from the hospital to home health care
families will have a support network to lean on, including a team
of medical professionals - doctors, nurses, therapists, home health
aides, and equipment suppliers. At many hospitals, a staff social
worker can help coordinate this team. The social worker also may be
able to help arrange home nursing and respiratory services, public
health nurse support, medical follow-up, and emotional support.
The process of getting comfortable with your child's home
health care begins at the hospital. Learn from the medical staff by
closely observing how they take care of your child, and how they
operate and maintain the necessary equipment. Be sure to ask
questions about anything you don't understand. Consider talking
with families whose children require similar medical equipment or
levels of care.
Planning Ahead
Family caregivers should be prepared for and well-informed about
the care a child requires. Caregivers will need to know how each
machine works, how to troubleshoot, and how to perform preventive
maintenance and any backup procedures.
Here are some factors to consider as you prepare for home health
care:
- You may need to make changes to your home to make it
accessible for a walker or wheelchair.
- The child's room will need the proper equipment,
sufficient electrical outlets, and a backup power supply from a
battery or generator. (Some insurance companies may provide
reimbursement.)
- It can be helpful if a bathroom or source of water is near
the child's room for bathing.
- Keep a list of emergency numbers by the phone.
- Emergency medical assistance and transportation should be
nearby. Inform your local ambulance company of your child's
medical condition before any situation comes up where you need
one.
- Devise a plan on how you'll handle all types of
emergencies, such as natural disasters, to handle getting the
child and any life-sustaining equipment out of harm's
way.
Family members should learn how to use and maintain all medical
equipment. They also should:
- understand the child's medical condition
- know how to detect problems
- know what to do in emergencies
- learn CPR
- know what to do if other emergencies arise - such as handling
dislodged equipment
- understand which situations are emergencies that require
medical care
The specific skills needed will depend on your child's
condition. The nurses and doctors can help you understand what you
may need to know, and may even have training dolls to help you
practice different procedures.
Home Health Care Assistance
The hospital social worker can help families arrange for nurses
and aides to come into the home to assist with care, if necessary.
They also can help determine any special qualifications home-care
workers might need to have.
In general, home caregivers should understand how to:
- spot the slightest change in the child's behavior or
appearance and communicate those changes to other caregivers
- administer medications
- monitor medication schedules
- assist with exercise and other therapies
You may want to prepare notes on your child's status and
require each nursing shift to do the same. That way, early signs of
trouble can be recognized and medical help summoned quickly.
Consider keeping a patient journal near your child's bed so
that nurses and family members can communicate about various
issues.
Types of Medical Equipment
Multitudes of medical equipment can be required for different
medical conditions, but there is some commonly used equipment for
when kids need assistance to breathe, eat, and perform vital bodily
functions, like voiding (urinating and defecating). Everyone
involved in caregiving should know how to use and maintain the
equipment and what to do if something goes wrong.
Breathing
-
Tracheostomy.
A tracheostomy, often referred to as just a "trach"
(say: "trake"), is a procedure in which a tube is
inserted directly into the airway through an opening made in the
neck, often done when a child cannot be weaned off of a
ventilator. Breathing equipment may be attached to the tube. The
term "trach" can refer to both the procedure and the
piece of equipment itself. All caregivers will have to remove,
change, and clean the tube on a regular basis.
-
Ventilator.
The ventilator, which attaches to the tracheostomy, performs
mechanical breathing for the child. Valves on the ventilator are
set to combine air and oxygen (if needed) to meet the child's
needs. All caregivers must learn how and when to adjust the
settings on the machine.
-
Manual resuscitation bag.
This breathing device is used as a backup for a ventilator or in
an emergency. It allows a caregiver to provide breaths for the
patient by squeezing a bag. It should be on hand in case the
ventilator fails.
-
Suction machine.
If a child can't cough to clear the airway, a suction machine
may be needed. Suctioning is done via a tiny tube inserted into
the airway (or trach opening). A variety of factors, such as the
child's condition and the humidity level in the home, will
determine how often suctioning needs to be done. Anyone providing
care should learn how to use the suctioning machine. Both a
bedside and a portable machine may be needed.
-
Pulse oximeter.
This small monitoring device measures heart rate and the amount
of oxygen in the blood. It can be attached to a finger or toe. A
wire leading to a monitor shows the readings and sounds an alarm
if they're abnormal. All caregivers need to know what the
child's normal readings are and how to recognize a false
alarm, which may occur if the device isn''t properly attached
or the child is moving the finger or toe.
Feeding
Sometimes kids cannot swallow food or need nutrition assistance.
To get this nutrition into the body, some systems use the
child's gastrointestinal (GI) tract (these are called
enteral
feeds) and some go directly into the bloodstream (these are called
parenteral
feeds).
The health care team will provide specific information about how
to handle different situations involving the equipment, such as
displacement or clogging of tubes.
-
Nasogastric tube (NG tube).
An NG tube is inserted through the nose and down the throat into
the stomach. It is used to provide formula when children need
help getting nourishment for a short period of time, such as a
few weeks. Some medications also can be given through an NG
tube
-
Feeding tube.
When longer-term support is needed, a tube can be placed through
the skin into the GI tract. A feeding pump sends formula into the
tubes and controls the rate and amount given. Some medications
also can be given through these tubes. Two commonly used tubes
are:
- gastrostomy tube (G-tube) goes directly into the
stomach
- jejunostomy tube goes directly into the small
intestine
-
Parenteral feeds.
When the GI tract isn't working properly, nutrition can be
given directly into the bloodstream. This can be done using a
central line
, which is inserted through a large vessel in the chest, neck, or
groin. The central line, and the area surrounding where it enters
the body, must be kept very clean to prevent infection. Formula
cannot be given directly through a central line; a special
mixture of nutrients must be given, based on the child's
needs. Parenteral feeds require an intravenous (IV) pump to
control the rate and amount of nutrition given.
Voiding
-
Diapers.
Older kids with conditions that make them unable to control their
excretions may urinate and defecate uncontrollably These kids may
need to wear diapers made especially for bigger children. It is
important for parents or caregivers to change the diapers
frequently so that a child is not wearing a soiled diaper for an
extended period of time. That can be uncomfortable and lead to
skin infections.
-
Catheter.
Children who need help urinating may have a tube that goes
through their urethra into the bladder, called a catheter. This
tube may stay in and continuously drain into a bag or may be
inserted several times a day to empty the bladder. Sometimes,
through surgery, a special pathway is made through the skin into
the bladder for easier catheterization. Whenever a catheter is
placed, it must be done according to the doctor's
instructions so that bacteria do not get into the bladder and
cause an infection.
-
Colostomy bag.
A colostomy is an operation in which the colon is rerouted to
empty through an artificial opening, bypassing the anus. Instead,
wastes are eliminated directly into a pouch worn over a surgical
opening on the abdomen. This bag must be changed frequently.
Support for Parents
It's important to be able to reach out for help and support,
whether it's from the medical professionals involved in your
child's care, or friends, family, or peers in similar
situations.
The medical care responsibilities of home health care can feel
overwhelming. And the demands of home care can easily make parents
feel isolated.
Whether you need emotional support or help managing the
household duties, don't hesitate to consult your doctor or
hospital about resources in your community.
Reviewed by:
Larissa Hirsch, MD
Date reviewed: May 2007
Note: All information is for educational purposes only. For specific medical advice,
diagnoses, and treatment, consult your doctor.
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